Birmingham girl featured in CHOP project

Photo courtesy of The Children’s Hospital of Philadelphia
A portrait of Paige Wills of Birmingham hangs in the Colket Translational Research Building at The Children’s Hospital of Philadelphia as part of the hospital’s Face to Face: The Craniofacial Program Portrait Project.

Staff photo by Vinny Tennis
Heather Wills, right, and her daughter Paige Willis sit at their home in Birmingham

When 12-year-old Paige Wills of Birmingham was born her eyes protruded abnormally from her head, she had a lazy eye and she didn’t hear well until she was 5 years old because her hearing aid wasn’t working.

“Paige has had 15 surgeries. And she’s a real trooper; she’s really been very brave,” said Paige’s mother, Heather Wills.

But amid these difficulties, Paige has done well at Patton Middle School, has a lot of friends and is very positive.

“Right now she’s doing very well in school. And she’s just one of the gang, and she’s able to handle the work,” said Heather.

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Paige was born with a Pfeiffer syndrome, a condition in which some plates in the skull fuse prematurely preventing further growth of the skull and causing problems for the face and head as it develops. The condition is caused by a genetic mutation, but what causes the mutation is still unknown.

“We don’t know what causes the mutation, we assume there are several environmental factors but no one knows for sure,” said Dr. Scott Bartlett, director of plastic and reconstructive surgery at Children’s Hospital of Philadelphia and one of Paige’s doctors.

While Pfeiffer syndrome only affects about one in 100,000 children, it is similar to other craniofacial conditions, or disorders that affect the face and skull. And Paige was recently featured with three other children in CHOP’s Face to Face: The Craniofacial Program Portrait Project, a project that features painted portraits of children and adolescents with craniofacial conditions. The first eight portraits were unveiled at CHOP in the fall of 2010, and the remaining four portraits, included Paige’s, were put up for display in November 2013.

“It’s self-esteem building and especially around adolescence,” which is a difficult time for any child, said Heather. “It’s such a privilege to have a portrait done of yourself, and it’s very uplifting.”

Each patient was paired with an artist from Studio Incamminati, a realist art school in Philadelphia. The two met several times and worked together on deciding the composition, and some portraits featured items that were important to subject. Paige posed next to a photo of her dog, Princey.

“I really bonded with him,” said Paige, who got Princey last year.

Paige not only loves her dogs, Princey and Roxy, but also aspires to open her own puppy shelter one day.

CHOP chose to feature children and adolescents with craniofacial disorders because a facial disfigurement can lead to poor self-esteem and bullying, according to the hospital’s website. It was a project intended to help the patients see themselves in a different light.

“These are regular people; they just have a facial deformity,” said Bartlett.

Fortunately, Paige doesn’t get teased much, said her mother.

“The children around here are really nice to her, and they’re just very compassionate,” said Heather.

Although sometimes Paige said that she will turn off her hearing aid.

“It’s a great way to deal with the world, just turn off the hearing sometimes when thing get a little crazy,” said Heather with a laugh.

Those with Pfeiffer syndrome can lead long, relatively healthy lives. The disorder causes issues as the child is developing. Paige has dealt with vision and hearing issues since birth, and currently her speech is being compromised because her jaw is growing forward while other parts of her face cannot. That means another surgery, and the surgeries will not stop until she is fully developed.

“When she was first born they told me she was going to have all of these surgeries,” said Heather. “And it was really scary because we didn’t know anyone who had this syndrome. And of course you don’t want your child to go through all these surgeries.”

However, the hospital and Bartlett have made it easier for both Paige and her family.

“Children’s Hospital made us pretty comfortable with everything,” said Heather. “We met other families that have gone through the same thing and had similar issues, and that made it a lot easier.”

Heather speculates that her daughter will always be dependent on the hospital, but the big reconstructive surgeries should come to an end by the time Paige is a young teenager and fully matured.

“Your next surgery, they’ll change her face around again and it will be even more beautiful,” Heather said to her daughter.